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in uk, or in case where I had my Bmt or sct, they put you on immunosuppressants normally cyclosporine when you are in hospital for the sct and you continue to take them at home for a few months while the graft is given time to establish and give it time to be established and not be attacked by the host. You are then weened off the immunosuppressants to let the body continue. If then gvhd sets in they initially put you then on prendisolone to calm the gvhd. If then then after a time if the prendisolone is not bringing all symptoms down then you may be offered Ecp or other immunosuppressive meds such as say cellcept. So I think the immunosuppressant meds they are talking about is the initial cyclosporine for the initial transplant for the graft to establish. You are right though with what you say though you don’t want to stop other immunosuppressants unless the symptoms have gone unless the meds have had no effect on the gvhd as you don’t want to continue taking them if they are doing nothing as you get the side effects with each med.As I said in previous post I had been on cellcept for last 3 months which has had no effect to my gvhd symptoms and the consultant said for me stop it and not take any more and I believe I am seeing good effects already that my edema is reducing around my ankles which seems to be a side effect of cellcept.
Thank you Michelleanne. It really helps.
Im really sorry you cant get the jakavi you need in the uk Dave. Terrible to suffer knowing it's not necessary... although with my chronic gvhd, I'm on jakavi, as well as one other.
A Prof in my clinic Zeiser or Zeisser, is doing studies on jakavi alternatives. Maybe you could get on one of his studies Dave?
I signed to join then bottled out. But worth a try. He's world renound in his area... chronic gvhd. .... Uniklinik Freiburg, ITZ.
Best wishes to you all,
I’m still on nearly all my meds , the drs reckon I’m going to be on them for years , it’s weird that we all take different ones ,
it’s a good job we have the nhs or similar as we couldn’t afford the treatment
I hope you get sorted soon with some form of meds to help you , that’s one thing mine gvhd is mild
hope all goes well keep strong
love &best wishes
It’s so good to hear from you all and the support that you give to each other and to me is wonderful.
you all suffer from such a hard, debilitating illness and yet your strength and personalities shine through. Although it’s my daughter and not me who is suffering from this illness, I feel as if you are all my friends. You all got me through some very dark hours .
Thank you Dave and Helen for your comments on tapering off the immune suppressants. I will pass them on to my daughter who can have more of a chat with her consultants. I just wish that she could put on a bit of weight. She is really trying with her eating. Did it take you all a while to start putting in some weight? I know that you’ve had lots of problems in this area , all of you, especially Helen so any advice would be appreciated.
i think that you are bound to have times when the roller coaster journey that you are on gets you down. Helen’s advice about speaking to yourself as you speak to the others in this group , sounds great advice .
love to everyone
it took me a good year before my weight gain , now my weight is upto what I was
don’t think it’s as much the amount of food , I have trouble with my thyroid
it’s very hard to eat properly , I eat soft food and I eat more sweet things , I never really fancy food try rice puddings , milkshakes or hot chocolate , my grandchildren eat more than me , I don’t eat a lot of meat but a lot of soft fish
you are doing amazing , take each day as it comes , eat what you fancy little and often
take care much love
About the weight, be patient, eat whatever you fancy, just eat, no rules that put you off eating. After nearly 2 years I'm starting to get stable, not yet putting on weight. I too have thyroid problems, interesting.
I think there's been a misunderstanding about Dave's meds. In the uk, the health service doesn't pay for a major immunsuppressant (jakavi) and it's terribly frustrating and depressing for thousands of sufferers. It's a topic here in Germany where they're carrying out studies on alternatives cos it's so expensive.
I' ll be off here, love to you all,
were really lucky here that we have the nhs so I’ve had all my treatment through that
i agree eat what you fancy ,
enjoy you’re weekend
when I left hospital after my transplant I was still losing weight due to my alimentary canal condition after the conditioning chemotherapy and getting mucousitus where you are unfortunately coughing up blood due to ulcers in throat. It takes a very long time for your body to repair this damage from the mouth down to stomach, and your natural stomach biome has also been destroyed and is continually being damaged by the antibiotics. I had pain and uncomfortable feelings in my stomach which have got better over the two years since my transplant but not completely gone. The taste of food is also changed and becomes very metallic tasting and this also takes a long while to normalise. I used to love to cook all types of food to eat but this live has gone for now after the treatment. I hope I get it back. I never seem to feel hungry any more so this can also reduce the quantity you eat. I guess I started to eat more when I got chronic gvhd about 7 months after transplant when I then started to take steroids and this makes one eat. Unfortunately you do not always have an appetite for healthy foods, but I started to eat pot noodles, pasties, Kit Kats etc a lot of rubbish really but it did help me put on weight. So as the others state you really have to eat at first what you fancy just to get weight on and slowly over time try to introduce some better things. Luckily I have put weight on but it is different for everyone.
With regard to Jakavi being available in uk for chronic gvhd I am led to believe by consultants that Anthony Nolan are trying to get it approved as it was when covid was rife. With sclerotic gvhd it seems to have worked well in covid times and also for patients in US and rest of Europe. I have read on the Facebook group many American patients with sclerotic gvhd have Ecp and Jakavi and in about 7 weeks a lot seem to get a start to skin loosening. I have now had this sclerotic gvhd for over a year and still no end in sight.
Hi Dave T
i totally agree with eating habits , I’ve changed so much with food , I can’t drink instant coffee or anything fizzy and no alcohol I’m so boring .
I hope you can get you’re gvhd sorted out soon
take care best wishes
Hi Dave, ...Michelleanne, Audrey,
Thanks so much for your update Dave.
Just to clarify where I stand with jakavi.... I'm in Germany where jakavi is prescribed by the state health system. I have fortnightly ECP and (immunosuppressive) jakavi 20mg/day. Unfortunately, since my other immunosuppressive medication (myfortic) was abruptly stopped "because I was doing so well", I've had a considerable gvhd flare up. That means I'm on two different immunosuppressive medications (jakavi and myfortic) and they are telling me I need to be patient about my skin recovering after the phase without the myfortic. Dave, the immobility from the skin gvhd is awful. I have a super physio who says the gvhd skin is like burnt skin and the only way to get elasticity back in it, is to move it. It's very very painful but needs to be moved, stretched through movement.
Sorry... I haven't done a very good job to explain things. Dave, I'm thinking of you and sending you compassion and kindness. I hope , even without jakavi, things get better.
Love to you all,
Thanks so much for all telling about your “ food” journey. It is reassuring to know that the problems with eating and food seems to be part of the recovery journey. Michelle my daughter is similar to you in that she seems to be craving sweet things and she didn’t have a sweet tooth before the second transplant!
Im always thinking about everyone here. It’s a very slow journey that you are all on with many ups and downs on the way. I’ve said this before but I will say it again - I think you are all so strong, brave and resilient and I really hope that you all have a better week ahead . Take care and be kind to yourselves . Xx
you are really going through bad times with you’re gvhd , I have it in with my skin but no where near as bad as you , I really hope you can get it sorted soon , I would say my eating is worse than my skin , sore throat and no taste buds
together we will get through this
take care and much love
Lots of mushy things. Finely chopped green leaves with lots of nice dressing, scrambled egg with a dash of cream over it, astronaut drink... but so expensive, bananas, weetabix warmed with milk and mashed up, ice cream. Finely chopped anything with dressing/sauce. I now like banana fritters with honey. Any cereal left to get soggy in milk.
Best of luck
Hi everyone . I have been thinking about you all and hope that the gvhd has improved a bit, Helen and Dave . I also hope that Michelle , you have been keeping as well as possible
my daughter is back in hospital again. Fourth time since she was discharged in December . Her lungs are still causing problems so a bronchoscopy booked for Tuesday.
They started her in immunoglobulin yesterday and she will get this as an outpatient every month to try and boost her immune system. You are all on you such a long hard journey but you will get there.
sorry to hear you’re daughter is back in hospital hope she feels better soon
im not too bad at the moment apart from aches and pains , enjoying time with grandchildren outside now the weather is a bit better .
how are you ?
Glad to hear that you are enjoying time with the grandkids. They really are a lovely distraction and hopefully the weather is moving in the right direction now for us to be all outside.
I’m going to be kept busy with the wee ones during the holidays. Helps me to focus on things other than worry and grief.
Oh no... back in again:(
Give her our love and best wishes.
Unfortunately my gvhd is chronic and so its 'take every day as it comes'. I'm a bit concerned for Dave, he's struggling.
I have a cold, cough, headach and the clinic are going to tell me what to do.... they just called back, I need to take a covid test and drink lots, inhale etc.. the usual.
Most days I feel like a Zombie, groggy, and for about an hour or two late in the day, I get a little time when I can do stuff like empty the dish washer... very slowly. Skin is still bad, eyes are not good but I got permission to drive again ( yipee!)
My eating, can't call it appetite, is still good, bowels working well... I just want to be normal and get back to life.
Thanks for keeping us posted about your daughter. I hope it's a short visit in the clinic, good to know she's in good hands and they can take her in when she needs it. Horrible for you and the kids though. Thinking of you,
Much love to you all,
i do get concerned about Dave and your daughter audrey , I also hope you are getting stronger helen
im like a zombie and weiry first thing in the morning and early evening sometimes all day , so I try and do things when I can
I was told normal is a cycle on the washing machine , as we are all different
I think we all have to learn not to be so hard on ourselves I agree just take each day as it comes
love and best wishes
Thank you very much Michelleanne. The washing machine 'normal' I've heard already, but you made me smile.
Unfortunately Dave can't get the meds he desperately needs in his UK health service. This is soo debilitating at the best of times, it must be awful. I have no ideas what he can do.
I hope this "frequent hospital stay" is a phase Audrey.. im praying your daughter will become stable, even if just for a while. You all need a rest from the roller coaster.
Love to all,
i wonder how Dave is , hopefully they’ll be able to help , we all do need to rest , even you audrey and look after ourselves
Thank you all for your conversation and thoughts. I do find all fairly difficult especially not being mobile. My life has always been outdoors, walking, gardening, diy, driving, cooking etc. never been a reader or inside type of person and with this skin scleroderma gvhd my skin is pulled so tight I can hardly walk and not stable so I spend about 26 hours in bed and 8 fixed in armchair in front of telly waiting for something to happen even if I got a bit of flexibility back. I am currently tapering off the prendisolone as they are not doing anything and I am not sure that being on a low dose is giving me mood swings and lots of fatigue as it is quite common with low dose steroids. My gvhd symptoms have remained stable now for about 9 months with legs being main issue. I am currently on 2.5mg prendisolone per day and I guess my consultants are trying to get me off it as not doing anything for me. They also stopped my cellcept immunosuppressant I was on for a couple of months as that does not do anything for me either as it does not target skin fibrosis as in cgvhd sclerosis. The only two really designed for the hard fibrotic skin are Jakavi and rezurock which as you know are not currently available in uk so unfortunately that also gets me down. I know everyone has thier own issues and is now easy for any of you. I am sorry your daughter has gone back into hospital, I am sure as her body picks up strength the visits will become fewer and hopefully she will soon not need to return as an in patient.
Hopefully you are all enjoying the sunny weather. I had my Ecp on Monday and Tuesday this week sessions 41 and 42 so not aloud in sun for a few days due to the uv effect. Tha nurses are gradually finding it easier to locate veins in my arms for Ecp and also it is getting slightly less painful inserting the needles. Maybe my skin is very slowly recovering and just need to give it time. Good luck everyone. Onwards and upwards.
Hi Dave, I think the ecp improves the quality of the veins. They find it easier with me too.
I sing (almost a hum) when they inject a needle. Amazing grace. They really like it, doctors too.. it calms them too. I prepare them and tell them I need to do it so they don't think I'm bonkers. I do it very quietly. The other song I do is my bonnie lies over the ocean.
Your description of the immobility gives me a sort of reprieve... I'm very similar. The prednisolon really depressed me big time on top of the immobility. It's famous for it.
I was in pyjamas till lunchtime today, slight temperature and cough, headache, but not covid.
Dave, you are with us, we all get a lot from the group and we all know if we don't hear from someone, they're meeting their needs in other ways, and that's good.
It's just awful, awful, awful, take every day as it comes on this roller coaster.
PS. Check out the link I put in the jakavi thread.
Hi all, was in the clinic this morning. I knew I wasn't balmy when they put me in a wheelchair. It was such a relief.
Doctor said my flare up was due to recent infection and they can't do anything. Paracetamol.
Happy Easter to you all you wonderful bunch, thank you for being there.
I had a chest infection at Christmas 2 lots of steroids & antibiotics still have it but they say it’s viral , I was told when needed to use my wheelchair but I feel such a fraud ,
hope everything else was aswell as it can be
happy Easter to you amazing people wish I could give you all a hug , I’ll send one virtual
You are all having so much to contend with and I think it’s amazing how despite what tug are going through individually, you all take the time and compassion to think about others. I can imagine how frustrating it is for you all to have to go at a much slower pace and not be able to do the things that you did before this horrible illness struck. You all sound as if you do as much as possible and I si wish that you will all take a step forward.
Michelle, I hope that your chest infection clears up soon and Helen and Dave, I really hope that you get some relief from the gvhd.
my daughter got out of hospital on Tuesday after having another bone marrow biopsy. The deep biopsy had come back positive. This result is like a sledge hammer. They are going to do another one next week but we’re all so worried .
anyway, I hope that you all have the best Easter possible .
im so sad to hear about you’re daughters bone marrow tests , I hope you get better news next week , you will all me in my thoughts and prayers , keep strong
always here for you
I too am sorry to hear about your daughters bone marrow biopsy, let us hope the next one is more positive. Like Michelleanne I am praying for you and your daughter.
I got gooseflesh as I read that awful news about your daughter's biopsy. I'm really sorry for you all.
A friend of mine had to have a second stem cell transplant for it to work. He's now doing really well 3 years later, much better than me. I'm praying, wishing....
A big virtual hug to you,
Hello Everyone and thank you for all your kind wishes for my daughter.
She has already had a second SCT . I am so hoping that next week’s biopsy comes back negative . She has gone through so much and needs a break. The initial biopsy was alright but it’s the deep one that has shown something up.
we had my sons internment of ashes today. We do need my daughter to get well. Xx
Oh Audrey, I'm with you. This is a terrible time, it begs belief. Sending hugs. Words aren't enough.